Category: Videos
Posted: 04/13/2010 11:28:19 AM
Views: 10653
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Synopsis: Are you newly diagnosed with Interstitial Cystitis (IC) and confused about what IC flares are? Intersititial Cystitis Network (ICN) President Jill Osborne talks about the two most common types of flares, how to recognize them, manage them and, hopefully, prevent future flares.
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Susan
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04/23/2010 12:31:38 PM
Thank you for this information and your website.
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Pamela Rae S.
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04/21/2010 02:37:02 PM
Thanks for this information!
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Paula C
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04/29/2010 07:02:16 PM
Thanks for this info and your website; I was diagnosed with IC 2 years ago. Life is livable with guidelines found on your website and I have a great doctor whose specialty is Female Pelvic Health in Knoxville, Tennessee.
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Walter D.
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04/30/2010 06:34:01 PM
Hey, I think you people are great for having information that is assessable to new patients! I, who know nothing about my problem, found input here that helps me understand what to do when i have a flare up.
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Susan O.
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05/02/2010 07:33:02 PM
I have found that if I avoid High Fructose Corn Syrup or fake sugars I do not have any flare ups. The HFCS causes my urgency and pain. I was going 50+ times a day I now go 12-15 times. So start reading labels and start asking restaurants about what ingredients are in there food. Last night I had pizza from Pizza Hut with no issues. For the last 2 months the only flare up I have had is when I ate a hot dog with Corn Syrup in it. I have been pain free every since; I finally figured this out. I feel like I got some of my life back not having to look for a bathroom constantly. Hope this information can help you!! It has been a long process for me. I've lost so much of my life. Good Luck!
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anonymous
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05/23/2010 10:17:16 PM
I've got diagnosed with IC recently and went to doctors for 2 years and took drugs without relief. My hope is to find a good doctor and it's not easy. I'll look for something that can help to relieve pain.
ICN Response: Don't give up! It sounds like you have a more complex case if the medications didn't seem to help you. I would look for a tertiary medical center, perhaps at a university or a federally funded IC research center because they see the most cases, as well as those that are unusual or complex. You can find a list of some of these centers if you click on this link: "Find an IC Specialist".
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Elisha C.
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06/03/2010 08:17:03 PM
Do muscle relaxers help with the symptoms such as spasms? My Dr. has not heard that and I thought one of your clips suggest that they do such as Valium. They said that medicines that are compounded are the best but not sure they told me to find out from someone such as your page about some other treatments I use Elmiron and it does not seem to help with spasms.
ICN Response - Yes, muscle relaxants can help if you are having muscle spasms in the pelvic floor. Patients may try Flexeril, valium or vaginal valium suppositories. There are others as well. Or, if you're having bladder spasms there are medications that help calm the bladder down such as Ditropan or Detrol. Compounded medications aren't necessarily safer.. and, in fact, in our latest IC Optimist we tell the story of a woman who received a badly repaired DMSO instillation created at a compounding pharmacy rather than from the pharmaceutical company that created dire complications. But, in some cases, medications are only available through a compounding pharmacy.. such as a vaginal valium suppository or a compounded, preservative free estrogen cream. Soo... it's about six of one half a dozen of the other. It's all about quality. Personally, I would prefer to get typical medications from the FDA approved pharmaceutical company because there are many more quality control standards. That said, if it's not available that way, then a compounding pharmacy that is VERY EXPERIENCED is the way to go. - Jill
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Anonymous
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10/10/2010 06:53:37 PM
I am a 32 year old woman and all of a sudden have been struggling with IC and pelvic floor dysfunction symptoms for about the past 5 months. I am on various medications that have significantly lessened my bathroom trips and muscle spasms. I am finding it extremely difficult to figure out what foods work for me though. I guess my question is how do I know its a flare up from something I ate or if I am just irritated or having muscle spasms. I had a regular cup of decaf coffee the other day and felt perfectly find for the rest of the day and then the next day I had discomfort. So that confuses me, thinking could it have been something else I ate or drank?
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Margaret
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06/22/2010 10:35:03 PM
I am an Australian woman who has had IC for quite a few years now. Unfortunately it appears that the IC group in Australia no longer exists although I am sure there are many suffering from IC. I have gained enormous information and comfort from the IC Network and feel that knowledge being power I can manage the pain and my life style much better with the information that I receive from videos like this. THANK YOU,THANK YOU, THANK YOU for mine and my families sanity. I have found a Urologist who specializes in IC and has studied it in the US but it seems she is also experimenting with different drugs and procedures that as yet have had no effect eg: Elmiron etc. The only relief I have is Hydro dilation and that lasts for only approx 8 weeks.
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Chris S.
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08/21/2010 03:40:29 PM
I am a male. I have experienced IC on and off since the mid 80's. My doctor then told me that only 1 out of thirty people with IC are males. I am one of the lucky ones.
I have not been bothered much during the last few years. It has been wonderful. But recently I have had to urinate much more frequently. Any kind of coffee (I only drink low acid decaf) seems to trigger the condition. But it has been weeks and frequency has continued. I don't understand why all of a sudden frequency has so increased.
ICN RESPONSE: Yes, coffee is brutal to an IC bladder. So you might have more success with one of the herbal coffees such as Pero or Cafix. If your symptoms have suddenly increased then it is always worth a quick visit to your doctor to rule out possible infections. Learn more about managing IC Flares in the ICN Self-Help center.
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anne w,
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10/11/2010 05:31:22 PM
This was a great piece on "flare ups" and made me feel like
I am not going crazy. Now I have some options to draw from
and I thank you. Flare ups are so painful and it is comforting to
know that there are so many resources.
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linda m.
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11/14/2010 10:45:30 PM
Why does HFCS (high fructose corn syrup) & salt irritate the bladder? My doctor recently put me on a K supplement (I had low potassium & Vit. D) Told me to take it daily....I asked him about the potassium/bladder connection. He said it shouldn't hurt, but isn't that an irritant too?
I've been drinking caffeine-free iced tea with sugar all summer with no problem. I just thought I'd share that tidbit =) Thanks!!
ICN RESPONSE: Thank you for your comments! We suggest that you visit our main support website THE IC NETWORK and ASK THIS QUESTION IN OUR SUPPORT FORUM!
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Karen R.
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11/27/2010 11:07:43 AM
I was diagnosed 3 months ago. IC and Hunner's Ulcers! My urologist prescribed Sanctura and Elmiron. I have been very serious with the diet and dosages, making sure to get them all in as directed. Life was miserable before TX. I'm doing very well, almost normal. Tyler's acid free/caffeine free coffee works for me! Don't know what I will do with my collection of a couple hundred bottles of fine red. :-)
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mary
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11/30/2010 01:37:00 PM
I am wondering if anyone knows the expense involved with doing self bladder instillations at home, it already costs me a 15$ co pay for the heparin, the other meds are about the same, what would the catheter kit cost I wonder and where do you get them?
ICN RESPONSE: Thank you for your comments! We suggest that you visit our main support website THE IC NETWORK and ASK THIS QUESTION IN OUR SUPPORT FORUM!
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Sierra B.
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02/16/2011 06:39:19 PM
I was just diagnosed several months ago with flares in retrospect for years mistakenly diagnosed as infections. I have had amazing results with Quecertein, bromelien and the powdered aloe vera from Desert Harvest. I just want to spread the word about the aloe. I swear I can feel it soothing my bladder walls. When I was recovering frmthe worst flare ever, I took the aloe and within 24 hours it felt like the walls were itching rather than raw, like a sore itches when it is healing. It's early in my process, but I'm very hopeful about the aloe. And what a great company, very compassionate customer service.
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Lynn K.
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08/13/2011 06:55:30 AM
Hello again Jill and all those who suffer with IC. I have a granddaughter who will be 21 soon. She has suffered a really bad flare today. Probably one of her worst. I do believe it was brought on by super stress in her life at this time. However it is such a great pleasure to be able to come onto this website and get all the valuable information offered. I was able to help her from this website again.
I bless you Jill and all who make this possible - every night. Thank you so much for being there.
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